Is Chronic Lyme Disease – Not Lyme Disease At All?

People who’ve been treated for Lyme disease and remain ill present a dilemma. Do they still have Lyme disease or did having Lyme disease for a time cause permanent damage or do they have something else?

During the Simmaron Research Foundation’s Patient Day, Dr. Konstance Knox, came down firmly on the possibility of “something else”.

Find out why she thinks many chronic Lyme disease patients may not have Lyme disease at all – and why some people with ME/CFS may fit in the same category – in a Simmaron Research Foundation sponsored post

12 Comments

To me the symptomatic differences between Lyme and ME are reasonably clear… with ME symptoms tend to lessen with aggressive rest but flare with crashes after exertion… whereas with Lyme GET type exercise is encouraged and will not result in crashes while symptoms won’t ease without treatment?

I wonder why there is such confusion and so many people say they are hard to differentiate..

I think the issue with differentiating from Lyme and ME/CFS is that many of the symptoms do overlap. I am CDC positive for Lyme disease, and I also have co-infections (Babesia, Bartonella), issues with all the viruses (CMV, EBV, HHV6). I suffer with POTS and PEM. I can’t exercise period and will pay the heavy price of a crash if I go above my anaerobic threshold. I only get a reprieve with heavy rest and treatment. Either alone doesn’t work for me.

I believe that post treatment Lyme is still Lyme. With treatment I guess you mean a couple of weeks with doxycycline. That does not kill the nasty spirochets that are extremely slow growing dividing about once a month.

I never believed in Lyme as any Cause ever & I still do not it is no doubts something else entirely likely Genetic in nature, not an infection…How much does anyone wanna bet Lyme CFS Fibro GWI deployed & non deployed are all undiagnosed Ehlers-Danlos Syndrome? Names of Labels all above let’s hope NIH now has found the Cause multiple Copies of the Tryptase Gene or easier spinal fluid leaks/tears are a treatable Cause…

It is impossible for all those conditions to be “undiagnosed EDS” for the 10, 20, 30 years and more that many people have had those conditions. The devastating way EDS takes victims eventually, could not possibly remain undiagnosed in favour of diagnoses of any of those other conditions. Furthermore, no-one with Fibromyalgia proper, has symptoms anything like EDS. A few people with EDS have been misdiagnosed as having FM, but only because the doctor did not check enough. And as I say, it has to get picked up eventually. The only thing in common is pain in particular places. But EDS is nothing like the inelastic fascia that is the problem in FM. If anything, it is a diametrically opposite condition.

Well, EDS absolutely can be misdiagnosed or missed entirely in people for decades.

(Forgive me I am going to ramble a bit here, in reference to both of the comments above. My perspective comes as a US citizen, who is not diagnosed with EDS, has hypermobility, and follows the illness because a loved one has it.)

Doctors are not all experts, nor are they all even good at their jobs. Plenty of doctors are dismissive and I have met people who can do the whole beighton criteria who were told to their face they weren’t hypermobile.

Similarly to ME/CFS it has been highly neglected and has very few specialists. I read a report that claimed there are 12 specialists in the US for ME/CFS. I think that is a tad low. In my tristate area there are a handful of docs who can (or will) reliably diagnose EDS. Most of them cannot (or will not) treat or manage the condition.

I have met people with EDS who also have fibro. It is possible to have comorbidities, and espcially seems to be common when they have an autoimmune illness as well. Having multiple illnesses doesn’t mean they are related necessarily, even if they commonly co-occur.

I however refute that all cases of ME/CFS, lyme, fibro, and gulf war illness are EDS that are undiagnosed.

Some will be. Some will not. Some people will have multiple illnesses.

Estimates for EDS and hypermobility at their most liberal were 1 in 60 or so, from a French study. Estimates in the US are usually reported at 1 in 5000. Already that is a huge discrepency so a gene is needed to get more specific. Some now suggest EDS 1 in 100 or so, but their new criteria sometimes actually excludes obvious cases of EDS because it was intended to strengthen research studies.

I could just as easily choose any one other chronic illness and blame all these illnesses on that. Let’s pretend for a moment we all have… latent MS. But that glosses over the immense complexity of the human body. It glosses over how MS has documented degeneration to track, a specific illness course (several), and what makes us unique.

You can believe what you want to believe, but realistically we are not at all similar enough to attribute all our our cases to one specific already defined illness. At best you can say we have similarities.

Some patients are like onions, you have to treat and peel one illness to uncover another symptom or illness– but it doesn’t mean you have found the cause.

There are many kinds of EDS, old criteria and new (march 2017). Most cases are not directly fatal, but they certainly cause suffering.

Even if EDS is the cause of some of the cases of each of these diagnoses, conflating us with them will not help EDSers get treatment.

It will not help us (all) get treatment.

All these illnesses are underfunded, under researched, underdiagnosed, and under-treated. We aren’t even clear if what they are currently called is what they will end up being known as. For all we know ME/CFS will actually be 10 different subtype illnesses, not even including the possible misdiagnosed case.

Gains for them will likely help some of us, gains for us will hopefully help them, and the people who exist at the intersection of multiple illnesses will hopefully finally get some help.

Do not forget also not everyone has the privilege of even seening a doctor. Even in the US we have huge areas with no regular doctors let alone specialists, and people who do not get the opportunity to travel for medical care, due to poverty or family adversity. (We have medical relief missions in the US, particularly in rural Appalachia.)

Others choose not to see a doctor or down play their symptoms. Some people give up when the first doctor says something like “you have ____” (psychosomatic, pain amplification, anxiety)*, and they deny any problems for the rest of their life due to religious, personal, cost, or just being defeated.

* Many EDSers have been told this junk, even when they have failed to heal from multiple surgeries, are bendy in every joint, or have a genetic component.

This can greatly contribute to why individuals and whole families may be missed who have genetic issues.

The biggest reason I have encountered is that people didn’t even realize they were different at all, physically, and thought it was all normal.

It takes decades, awareness building, coordinated activism, funding, interest, etc to make a disorder known. For example… There is a reason Lupus is so well known in the US and it is not that it is extremely common. And AIDS. Both of these illnesses pursued awareness, and forced it.

Dysautonomia month was last month and it’s currently estimated 60 million people are effected. 9/10 people I speak to that don’t have autonomic dysfunction don’t know what the heck it is. They may know a symptom, but not a cause.

ME/CFS activism especially will have more in common with dysautonomia if not mostly because we are best known by a symptom that people already think they know (fatigue). They don’t realize even doctors don’t have a consensus on what fatigue really means medically. In dysautonomia’s case everyone will know feinting. That doesn’t mean that’s what dysautonomia is (only 40% of POTS patients have a history of feinting).

Mary
on November 21, 2017 at 11:43 pm

What a fabulous post. Thank you for taking the time to organize and write such clear information. It is greatly appreciated. I and son have hyper mobility, and no clear diagnosis of EDS. Know also that it is imp. in history and records due to possible effects on vascular/heart issues. This conversation must be continued by us as patients for the bio medical culture is leaving us to our own devices, bec. this illness is over specialised. Any family practitioner should have the knowledge to diagnose this…but they do not

Thank you for taking the time to write such an organized and informative post. I an son have EDS. I knew I’d found an excellent pediatrician when during examining my son she called me into the office and asked about his reflexes. she aksed if we were hyper extended. As I replied “yes” and expressed surprise at her having understood this, she replied “Well it’s my business to know this in MY job!” What a wonderful doctor. Unfortunately she knew nothing about CFS?ME, Lyme etc.
Every family doctor should be aware and as a medical student educator (not a doctor) I am going to press the faculty I know about this. I will stress the cardiovascular matters (which I only recently learned of,) as that will be a point from which their allopathic differential thinking brains will perhaps engage!